I feel guilty that I want my life back.


I'm 67, single and retired. So I have it a lot better than many people in being the full-time caregiver for my 87-year-old mother. On this forum, I read things people are going through and I realize how lucky I am. Mom has been diagnosed with dementia, but she is high functioning, still takes care of her own hygiene, and can get around the house on her own. When dad went into a memory care facility a year ago (he passed away four months ago), I moved in with mom. I gave up my own home (I still have it, but can't live in it), my social life, my freedom to come and go as I wish and cook the food I want. I can't travel. My beloved cat passed away last year and I can't get another one. I love my mother and I am not bitter about doing this, but I want my life back. I know there is only one way to get it back, and I feel terrible about the way I feel. Does anyone else struggle with these feelings of guilt? I'm not looking for suggestions about getting help, respite care, etc. I want to know if others feel guilty about wanting their lives back. I want to know that I'm not alone in feeling this way. Thanks to all.

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I can relate. I am single, in my late 50's, and all of the sudden my life took a drastic change. Since my sister's live further away, or wanted to put mom in a home, I moved in with my mother to care for her. Mom has been diagnosed with advanced state emphysema ( see never smoked, dad did) and heart failure.

Let me say from the start, I don't regret my decision. If not for my mom and her two jobs, I would not have my college degree. Yet, my life has stopped. No more going out when the spirit moved me since she need to be supervised; no more late night out with my friends; and my current relationship is strained due to the limitations. Just to go to the gym in the morning or groceries, it is a chore.

Let's talk about getting her in the car - not an easy task - and how I hat the walker! I get help from hospice but it's trying to hold down a job, deal with the crisis when they come up, clean, cook ...... you get the idea. Friends call only once in a while since they know I am not flexible, thus, the feeling of being lonely. My friends are not the nurses and others that help me take care of her.

I hate that I don't have my old mother back!

I too, at time want to just, "have it finally over," knowing very well what that means. The guilt kicks in and I feel like a terrible son. Everything is about, "how she is feeling," yet it no one seems to ask how I am doing. When things get difficult and I have those ups-and-downs - when I am not sure if she is about transition or come out of it (she does see to have 9 lives) where do I go to cry or get some air.

Family does not seem to get it since they are miles away. Add to this that I am the "gay son" and my sisters seem to think it is alright that all this falls on me, "since I don't have a family."

I guess it what I am trying to say is, that it is ok to feel that way - I do, many time.  It does not mean I don't love me mother (and I deeply do), I am just human.  I try to find my little escapes, find people to share my feeling - and I have learned one great lesson in all this - I NEED TO ASK FOR HELP.  Using this site is one of those ways.  

I am glad you shared, thank you,  I now know I am not the only one thinking this way at times.  

I understand your feelings. I have only just started this caregiving journey and wonder how I can do anything else. My brothers carry on with tbeir daily lives but I cant. I love my parents dwarly and live in fear of loosing them, but want to live my life too. Since I am not married anymore and my daughter is grown, it just fell to me to give up everything, and ir seems that noone cares.
Well thats my whining for today.

I want my life back, too. I think most of us here do as well. Don't feel guilty. We had a life before we became caregivers.

Now a day, old people live way too long thanks to modern medicine and medical treatments, yet they can not support themselves therefore become a huge burden on their children.

@BarbBrooklyn: I should clarify. I was basically living with my parents after my dad started getting sick because she couldn't handle him. I chose to do that and I chose to stay with my mother when we put dad in memory care. I do it because my mother cannot live alone and I'm not willing to put her in a facility. This is my choice, and I know I will never have one moment of regret that I didn't do everything I could for my dad and her. That doesn't stop me from wanting my life back, though.

Trust me, even those people who post on here and say how honored they feel to be tasked with caregiving for a loved one absolutely have moments of doubt and annoyance, especially when they’ve given up what you have, which is a lot.

I am my bedridden hubby’s sole caregiver and not a day goes by that I don’t wish I had a life. Not the low-cost mobile phone advertisement retired couple kind of life, but even the ability to go to a flea market with hubby for an afternoon. Or go to a restaurant and watch a ballgame on the televisions there like we used to.

Truth is, and not to sound harsh, but change is a part of life. I’ve learned no one will hand you a life. You have to make it and take it yourself. I worry when I leave hubby to visit our grandsons that there may be a fire and he won’t be able to get out. But, I don’t sit home, nervously by and wait to smell smoke either. Sometimes you have to be selfish. If your mom is still pretty high-functioning, do it now. Find home health care who will offer a few hours of respite care for you. It would be worth the hourly fee. But above all, don’t feel guilty. Unless Mom is allergic, can you figure out a way to get another kitty? My husband disliked cats and when we “inherited” my son’s cat, well, Cole now sleeps on hubby’s bed and hubby calls Cole “my cat”. Go figure!

debbye, no, you're not alone in struggling with feeling guilty about wishing freedom hadn't left your life and knowing there's really only one way, short of simply abandoning someone (or dying first), that you're going to regain it. Caregivers' situations are all different, but I think you've hit on one of our important commonalities -- loss of freedom and the doubt about ones self that comes with wanting it back. You mentioned that you feel lucky that your mom doesn't have hygiene or mobility issues, but I think those tend to be things that we caregivers just learn to handle as the needs arise and soon we don't give much thought to those new routines. Longing for freedom, knowing how it will come, and feeling guilty about it -- that's harder.

Debby, I felt this way the WHOLE time my mom was in a NH--I wasn't even a FT caregiver--but I resented the fact that I didn't have enough time with my grandchildren, my husband, had to give up income because I couldn't work overtime or a second job as I had in the past.

When you say you "had to" move in with your mom, I wonder why that was?

I am about ten years younger than you, but have a similar situation in that I am retired early and therefore struggle with feeling lucky I have the time and finances to be there for my dad, but also wanting my life back. (if it wasn't for him, I would probably get another job for as I did enjoy what I was doing. ) But really wonder how people who work full time and have families can be doing this? In their case, not only they but their families pay the price.

Anyway, oddly, because I don't have a job, I SOMETIMES feel that being there for my dad gives me some sort of purpose. But at the same time I want a normal life back, then I struggle with the guilt of wanting that.

But while no two people can feel the exact same way, I do really feel a lot of the things you are feeling, and as you suggested, there isn't always an answer for that.